It’s M.E Awareness Week 2018!

You’ve seen the first blog post of M.E Awareness Week yesterday, about how bad M.E can get. You’ll get to see a more humourous blog post next Sunday, all about the ridiculous theories I have encountered concerning the cause and treatment of M.E.

What else am I doing for M.E Awareness Week 2018?

Donate

That’s 25% of ALL donations, not just profit. I should also clarify that I will be donating 25% of the money donated BEFORE PayPal take their cut. If you donate £10, $2.50 goes to the M.E Assocation. Click on the donate tab in the menu to proceed!

Find out more about the M.E Association here: http://www.meassociation.org.uk/

Q&A

You can send me your questions via social media, through social media private messaging services, or by going to the contact tab in the menu above. I am willing to answer anything about living with M.E, so submit your questions! The video will be posted on here on Saturday!

The Worst Days.

As diabolically insane as this sounds it’s sometimes all too easy to forget just how bad my Chronic Fatigue Syndrome can get. I get so caught up in the managing of day-to-day events like work and chores that I forget the reason why I manage these tasks so carefully, and then a relapse arrives.

I know it’s going to be a tough day when I wake up and can’t open my eyes. It usually takes several minutes and a monumental effort to finally prise my eyelids apart, and it’s rare that I can keep my eyes open for longer than a second or two. When Jarred switches the light on it feels like I’m looking directly at the sun, and usually aggravates the dull throbbing in my head. Even when lying down my muscles feel fatigued and my joints ache, so much so that sitting up isn’t an option, and nausea ensures my constant discomfort.

Jarred will fetch me a cup of water and my medication from the kitchen, as often I cannot face eating anything for breakfast. Then he will go about his daily business and allow me to sink back into sheets and fall asleep.

The sleep I get on these days is not restful, but is broken regularly by short spells of wakefulness before I drift off again. I will dream vividly as I lose track of time, and while the dreams I have when I feel this way are not nightmares, they’re not exactly pleasant either. Eventually, after approximately five of these dreaming sessions, I will wake up properly. I feel more alert and aware of the things going on around me and my eyes stay open of their own accord. At this point I know I will not sleep for another few hours.

Jarred nips in and out of the bedroom between his daily activities to check on me, so I don’t normally have long to wait before he finds me awake. If I think I can stomach it he will make me a small sandwich or a bowl of soup, propping up our pillows on the bedhead and lifting my shoulders, so that all I have to do is shuffle slowly until I’m leant against the pillows.

After eating, if I manage to eat at all, comes the hardest part of the day. My mind will be constantly active at this point, often focussing on tasks that I had planned to attend to that day but my body simply can’t keep up. I grow bored and restless but can do nothing about it. If I’m lucky I might be able to read a book for a little while, but even the smallest volumes make my arms hurt as I read. Often Jarred has brought through a simple board game likes snakes and ladders which at least takes my mind off of my condition for a short while. Sometimes I will lean on Jarred and he will practically carry me into the lounge where I can sit on the sofa and binge watch something on Netflix, but moving me from room to room is difficult for both of us.

As the evening closes in Jarred will offer me another small something to eat, and will then sit on the bed with a basin of tepid water, washing my hands and face for me. By this point it is all I can do not to fall onto the pillows as Jarred lays them flat on the mattress, pulling the duvet over me as I lack the necessary strength to do this. It doesn’t take me long to fall asleep, but I will be plagued by spells of waking and vivid dreams for most of the night.

These spells can last for several days or even for a week or two in particularly bad cases. They are undeniably strenuous for me, but also apply pressure to those around me. Similarly the backlog of tasks not done often makes the recovery harder, as once I am able to turn my attention to them I have so many to do that it is overwhelming. Fortunately these spells are not common; as far as CFS goes, I’m one of the lucky ones.

Wheels of Steel: Another Short Story.

Opposite 10 Downing Street a crowd of photographers and news reporters had gathered, all hoping to get the best images of the new Prime Minister entering the house for the first time. As the police escort appeared around the corner the crowd erupted and the cameras started flashing. In place of the sleek, black car the previous Prime Minister had, she arrived in a small van which drew somewhat less gracefully to a halt outside number 10.

The chauffeur climbed out of the driving seat, ignoring the crowd completely, and opened up the back of the van. He pulled out a metal ramp, which he made sure was secure before the Prime Minister wheeled herself backwards onto the road. She made sure to wave to everyone opposite before making her way a few metres down the street to where a temporary plastic ramp had been put in place to get her onto the pavement. Once aligned perfectly she pushed herself up the ramp, and stopped to push a loose strand of hair back from her face before making her way towards her new home.

By the time she arrived at the door of the house the chauffer had cleared up the ramp and driven off, so the photographers got a clear view of her as the infamous black door slowly opened. Another plastic ramp in a garish orange that clashed with the otherwise refined scene was placed down, and the Prime Minister went indoors. When the door was closed firmly behind her she was relieved to finally be away from the prying eyes of the news corporations.

“Welcome, Prime Minister,” the head of staff nodded her head politely.

“Please, call me Sarah,” the Prime Minister returned equally politely, “I’m aware that it is not conventional, but then I doubt that I am going to be a conventional Prime Minister.”

“Indeed, Prime Minister,” the head of staff retorted somewhat more stiffly.

Sarah made her way down the wide hallway, her wheels sinking into the thick, woollen carpet leaving conspicuous tracks behind her. She was introduced to all of the senior members of staff that she would be working with, but the meeting she enjoyed the most was that of Simon the ginger cat. Being a friendly cat used to being around an ever-changing staff, Simon was more than happy to leap straight onto Sarah’s lap and to be driven around the house at his leisure.

Simons' New Friend from Wheels of Steel.

As Sarah entered her office, eyeing the large stack of paperwork already on her desk, she asked to speak to the caretaker of the house. A few minutes of fussing Simon later, Sarah heard a rough knock on the heavy door.

“Come in,” she said.

“You asked to see me, Prime Minister?” the caretaker replied.

“Sarah, please. There are going to have to be a few modifications made to the house, I’m afraid,” Sarah said, “If I am to live and work here in comfort, then I need full wheelchair access to all that I will use.” Simon gave an affirmative meow.

“Yes, of course. There are builders booked for this afternoon to install cement ramps at the front door and also on the pavement outside,” he informed her.

“Fantastic. Now, what about the stairs?” Sarah asked.

“I have a team of engineers coming out tomorrow who will be fitting special stair lifts than can take both you and your wheelchair upstairs.”

“How considerate of you,” Sarah said, impressed.

“A shorter lectern is being built so that you may address the reporters outside as all other Prime Ministers have done, and I was wondering if you would need some mats fitting that would make it easier for you to get over that carpet?”

“That would be ideal, yes. It seems you have everything covered,” Sarah said, “Do you have experience at handling a wheelchair user?”

“My daughter uses a wheelchair, so I know the sort of thing that causes problems. She’s a big fan, by the way. I’m only sorry that I’ve not been able to address any of these issues any sooner.”

“That’s perfectly understandable,” Sarah said, “Now if you’ll excuse me, it appears I have a lot of work to attend to.”

“Yes, Pri- Sarah,” the caretaker nodded and left the room.

Sarah smiled. At least she had one member of staff on her side.

***

Sarah’s first day in the Houses of Parliament as Prime Minister was an interesting one. Although she knew her way around the Palace of Westminster very well, she was used to sitting at one of the back benches on the very top row. All of the other seats had a flight of steps down to them. She knew that over the weekend a lift had been installed that would enable her to take her proper place in parliament, but she still worried that somehow the access would go wrong.

Two guards nodded to her before opening the double doors to the House of Commons, where she was greeted with a round of applause. She was happy to see most members of her political party give a standing ovation, however ironic that may have been. Sarah moved onto the flimsy-looking platform lift that had been installed, and then began the longest and loudest descent into the House of Commons that had ever taken place. Finally she reached the bottom, and took her place opposite her counterpart in the opposition, who fixed her with a long stare.

The House was called to order and the days’ debates began.

“Forgive me, Prime Minister, but I am not going to take things easy on you because of your condition,” the leader of the opposition opened proceedings. Sarah would have appreciated the sentiment had it not been said in such a condescending manner.

“In fact,” he continued, “I expect as much of you as I did your predecessor, although that’s not a great standard to reach, I know.”

Before Sarah had thought about it, she opened her mouth.

“Let me stop you there, sir,” she said curtly, before leaning into the microphone to address the whole house.

“No one should expect any less of me because of my wheelchair, or because I am a woman. Do not judge me by the standards of those who came before me because I am not those people. In fact you should expect more from me than any recent Prime Minister, because instead of participating in such farcical pettiness as to continually insult each other, I intend to debate and resolve real issues. Now if you have nothing constructive to add I suggest that we start to do what we are paid to do,” Sarah expected to be met with a stony silence, particularly from the opposition, but was astounded when every single politician in the room bar herself and her rival began to applaud loudly. Many even got to their feet and it was several minutes before the house was returned to order.

After what Sarah judged to be a particularly productive day in parliament, when several pressing matters had been debated in detail, she was extremely happy to find that her small speech had made headline news. Her particular favourite of all the headlines was the one that called her “Wheels of Steel”.

***

“What’s on the agenda for today?” Sarah asked her personal assistant, a stern looking woman old enough to be her mother, and a close friend of the head of staff. Her assistant looked down her nose through her spindly glasses at the papers before her.

“Your first formal meeting with the Queen since your election, Prime Minister, at Buckingham Palace,” she informed the Prime Minister in a cold, clipped tone.

“Ah yes, I knew it was something significant. How silly of me to forget,” Sarah flashed a smile at her assistant, which instantly died on her face on recipient of a disapproving look.

Sarah was not surprised to find a large gathering of reporters clambering up the railings surrounding Buckingham Palace as her van drove onto the grounds. Sarah, not usually one to be overly concerned with her appearance, had been patting her hair into shape and checking her teeth for lipstick stains throughout the whole journey. She was relieved that their assigned parking spot was well out of sight of the reporters.

Sarah was escorted by the palace guards to an impressive room with a ceiling that Sarah imagined must look tall even from standing height. The furniture around her was beautifully ornate and fit perfectly with the rooms’ decoration. Next to it all, she imagined that her own chair looked rather shabby.

The doors opened precisely on time, and Sarah couldn’t help but resist the urge to stand up even though she physically couldn’t. The Queen walked slowly into the room in a delicate, baby-blue outfit, followed by a parade of lumbering corgis with tongues lolling from their mouths. The dogs were very keen to explore the new Prime Minister, particularly her chair, and Sarah decided that she definitely preferred Simons’ affection.

The Queen seated herself opposite Sarah and seconds later a butler appeared with a pot of tea and some biscuits.

“There’s some Yorkshire tea brewing in the pot, ma’am,” he said to the Queen.

“Ah, thank you, much better than that Lancashire tea Philip bought the other week.”

Sarah smiled awkwardly, her hands clasped in her lap to prevent them from being licked away by a corgi.

“Well, I must say,” the Queen began, “that ever since they put all the new ramps into this section of the palace for our meetings, I’ve had trouble keeping Philip from skateboarding indoors. I’ve told him countless times that the skateboard is for the garden only but he can be ever so childish. He’ll ruin the carpet.”

Sarah suppressed a smile, but couldn’t help but laugh when there was a well-timed thump from outside the room, followed by the crash of something valuable-sounding breaking. The Queen rolled her eyes.

“Still, it’s been much easier for my darling corgis to move around, the stairs do trouble them so,” she continued.

“I can only imagine the difficulties they have,” Sarah returned politely.

“Now, to business-“

***

The following day, Sarah was booked to open a new school just a few miles from Downing Street. She couldn’t help but feel that in comparison to her usual duties, this would be a breeze. As the van pulled up outside the new building, a generic cube of bricks and glass, Sarah was greeted by the usual crowds. By this point the chauffer had moving the wheelchair in and out of the van down to a fine art, and Sarah had a few minutes to pose for photographs and answer a few questions before heading to the crowd gathered on the playground, all huddled beneath umbrellas against the summer rain.

A small stage had been built on the playground by a plaque on the wall of the school, which was still covered by little velvet curtains. A rickety ramp lead onto the stage and as Sarah took her place on the stage, she said a private prayer for her own safety.

The head teacher introduced the Prime Minister to rows of bored and cold children, most of whom seemed more interested in the news reporters by the school fence than the event itself.

“Now,” the head teacher said,” before we open the school, the Prime Minister has very kindly agreed to answer three questions. Raise your hands if you want the chance to ask her something and be polite. You represent our school!”

A flurry of small hands immediately appeared over the children’s heads and a girl in the middle of the group was chosen.

“Why are you in a wheelchair?” she asked innocently. Sarah had counted on this being one of the questions asked and was certainly not offended by it, but the teachers looked heartily embarrassed.

“I suffered a really horrible illness as a child that left permanent injuries and they mean I can’t walk,” Sarah answered calmly, hoping to reassure the embarrassed teachers. The girl who had asked seemed to be satisfied with this answer.

A second child, a boy this time, was chosen.

“How can you be Prime Minister from a wheelchair? My dad says its political correctness gone mad, but I don’t know what he means by that,” he queried. This time the teachers looked as if they wanted the ground to open up and swallow them whole where they stood.

“The job involves lots of things like sitting at a desk or table, doing paperwork, or talking to people. You’d sit in a chair to do them so the wheelchair poses no difficulty there. What your dad means is that he thinks I’ve been elected purely because I’m in a wheelchair and not because of other things like experience or knowledge, although I assure you that is not true.”

The teachers dared not brave another question after this; ten minutes later the school building had been opened and Sarah was mingling with teachers and parents in the schools’ dining hall. Sarah actually found the questions posed to her by children to be far easier to deal with than some of the adults, who ignored the wheelchair to such an extent that it became clear that the wheelchair was all they could see. She was relieved when, after half an hour or so, her staff came to escort her home to deal with some more pressing matters.

As soon as Sarah had returned to her office she switched on the small television in the corner of the room, where it was pre-programmed to a news channel. Immediately she was confronted with images of herself answering the children’s’ questions as the news reporters discussed the issue of political correctness in politics. Sarah rolled her eyes; she was surprised that it had taken this long for people to start such a discussion.